Dec 3, 2008

THANKSGIVING

We hosted Thanksgiving at our house this year and it was wonderful. Of course we missed our family that could not be there, but overall we had a great day. Johns sister, husband and three nieces were able to come in from Michigan and join us. They have just spent the last eight years of their life as missionaries in Albania so it was great to see them and spend some time with them. They are awesome people, Johns niece's are sooo smart, they speak English and Albanian. Maggie the oldest is eight and she plays the violin amazingly!! It was a fun filled day of singing, praying, playing, dancing , having fun and being thankful for all of the blessings in our life!!!

......... here is Brennan just hanging out................




and Kaleb finally stepped in front of the camera.......

the boys playing the Wii, and of course Ayla had to join in on the fun!!

The girls playing............

Maggie entertaining us with her violin!!

and Ayla and Memaw dancing made for a very fun day!!


THE CLAY CENTER

Instead of shopping the day after Thanksgiving, I decided to take Ayla to the Clay Center to play. They were having Christmas activities all day long with lots of Christmas Trees and Trains to look at so I thought It would be a great opportunity to get her out of the house and have fun. This was the first time going since she has started feeling better and she had a great time. She was running, going down the slide and jumping into the ball pit with no problems at all. This is the first time that I actually had to keep up with her!! Santa Clause also made an appearance but we just waved and kept our distance. She was not to sure about him and I saw no reason to traumatize her and make her sit on his lap. Overall, it was a very fun day of play!!!!!!! She is still doing really well, we have a Dr's appointment this Friday so I will keep everyone posted!! For the time being, we are enjoying watching our little girl come out of her shell for the first time since I can remember. Our prayers are being answered and we are so thankful!!


Nov 20, 2008

Great news, dishes and shopping!!


She even puts them on the counter!


Mommy's little helper! She has always
loved helping me with the dishes!


What is it with kids and baskets? I don't
Know but it sure makes for a cute picture!


This is how I found Ayla and her "friends"
one afternoon after a nap. They are all
lined up perfectly watching television.
I Love my brother!


I can do it!!
First of all I just want to say that Ayla is doing awesome! She is running around, playing, laughing and acting silly! Just two nights ago John said, "look, she is acting like a normal two year old". She is jumping (with both feet off the ground) something she has never been able to do and doing flip flops all over the floor, it is so amazing to see her doing all of these new things. Her neck is doing great, she is turning it without a problem, I am just thrilled as you can probably tell by this post. It is a double edged sword though I have to admit, I feel like we have been robbed of one whole year. One whole year of crying, pain and not feeling well...but I will try not to complain..... It really is amazing the difference we are seeing in her. I know that steroids have helped, but maybe the methotrexate has started to help as well. Her next appointment is December 5th so we will see what the PR says...she will probably want to start weaning Ayla off of the Pred to see if the mtx is working.
I have posted a few pictures tonight, because it has been a while since I have posted any.
The kids are both into climbing right now...they climb on anything and everything, today I found both of them on top of the sub woofer in our living room. Needless to say I unplugged it and it is gone. Ayla has also been climbing on our bar stool in the kitchen so we had to put that up as well. The other day she was playing in her room and she came running out saying "I did it, I did it", and I said you did what Ayla and she took me to her room and showed me. She pulled her potty chair(which she never uses) up to her door, stepped on top of it and turned her light off.. she was so proud!!
Lately, Ayla and Brennan have been going into Ayla's room to play. She loves getting him to follow her into her room. We decided to get a video monitor so that we could watch them because every once in a while, Ayla will push Brennan down, you know totally an accident I'm sure..lol...of course we have had the monitor for a few days now and guess where they go to play.. yep that's right, now they go to Brennan's room to play. So last night they were in his room playing and next thing I hear is Brennan screaming. I don't know what happened but Brennan had a huge and I mean huge bump protruding from his forehead. Ayla kept saying "he fall down" um hum wonder how that happened? Needless to say, no more alone play time for them!
Lastly, if you have a little girl and you love custom clothing like I do, then please check out the link on my left side bar or visit kandykissesboutiquetypepad.com. This designer sells on ebay, etsy and on her web site. Her designs are gorgeous so go and check them out. She is having a huge sale on black Friday, November the 28 and is giving away prizes all day long every hour.
We have lab work tomorrow, so I will keep everyone posted on how that goes!

Nov 14, 2008

" OUR LIFE "

It has been a little over one week since Ayla started on Prednisone and the results have been great so far. Her joints are still swollen, but overall she does not act like she is in pain and for the first time in a long time, it doesn't take her thirty minutes in the morning before she will start walking. Her face is a little puffy from the steroid but I guess that is a minor detail when looking at the larger picture.
It is still not easy giving her five medicines at three different times a day but this is "Our Life" now and is all Ayla has ever known. When she first started on the Naproxen eight months ago, I would coerce her with a sucker so that she would take it. I was having a problem with her taking the Prednisone and Zantac after lunch and a sucker was not doing the trick, so I offered her m&m'S and it is working like a charm. This is the first time she has ever had m&m's and she of course loves them. She only gets three, but sometimes I have to admit that I give in and give her five..or so... I know what a terrible mom!!
This Saturday will be her fourth dose of Methotrexate, I am hoping that we will see some results soon. The holidays are fast approaching us and I would love to see her feeling well and enjoying the holidays. I am excited and looking forward to Thanksgiving and Christmas, but I will also be excited to put this year behind us and start a new year. This year has been full of heartache after heartache, appointments after appointments, medicines and more medicines, months of physical therapy, countless times of blood work, x-rays... you name it we have done it. Hopefully a new year will be a new beginning for our little Ayla! As Kate says on the TLC show John and Kate plus eight... it may be a crazy life, but "It is our life!"

Nov 7, 2008

Brennan's one year appointment!


Today was Brennan's one year old well child visit. Everything went great. Except for a little reflux, he continues to thrive weighing in at a healthy 22 pounds and 30 inches long. He is only 4 pounds lighter than his two year old sister!! Of course she is on the small side for her age. I am going to start him on prevacid for his reflux so hopefully that will help. I decided to skip his one year immunizations and only give him the flu shot. John and I have been struggling with whether or not to have him vaccinated and we just decided that right now we will wait. We have went over and over in our minds of when Ayla started feeling bad and we know that she was well and healthy until she had her one year immunizations. After that she never felt well again. I am not saying that the MMR or any other vaccines caused her JRA, but it does make you think. Anyway, with the rise of autism in kids and the more I read about vaccinations, I just want to wait until he gets a little bigger. The doctor was very understanding about it and she said I could even wait until he starts school to get him immunized. With me staying at home with him, it turns out it really is no big deal!! What a relief for me!

JRA ABC NEWS ARTICLE

ARTICLE FEATURED ON ABC NEWS CONCERNING CHILDREN AND ARTHRITIS Nov. 6, 2008
Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway."Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.Lying to Keep the SecretAlthough some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated."Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends."Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis."Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."Finding Someone to TellAs debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him."Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment."Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition."Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her."With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child."In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."Copyright © 2008 ABC News Internet Ventures

Nov 5, 2008

And On A Lighter Note...............

HOW DO YOU KEEP YOUR ONE YEAR OLD FROM RUNNING DOWN THE HALL AND BURSTING INTO HIS TWO YEAR OLD
SISTERS ROOM AND WAKING HER UP IN THE MORNINGS?

Well this is how I DO IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!




A VACUUM!! Yes that's right, A simple vacuum
will do the trick! Okay here is the story. My sweet precious one year old Brennan loves to play a game in the mornings where he runs down the hall and I go chasing after him. He thinks this is so funny and will do it over and over and over again. If I do not go chasing after him, he goes bursting into his sleeping sisters room and wakes her up. This is not good because if you wake her up before she is ready,she is extra crabby!! So after doing this a few hundred times, I kept thinking of ways I could keep Brennan from running down the hall. A gate would have been good, but I did not have one. But what I DID have
was a vacuum cleaner in which Brennan will not go near! hmmm would this work I thought? Is this a mean thing to do? Well I thought it was worth a try and yesterday I put the good old vacuum cleaner in the hallway and I am happy to say that Brennan did not run down the hallway one time...hehehe!!!!!!
Okay this is an update to my update yesterday! While we were at the hospital waiting to get x-rays, John noticed that Ayla's left knee was swollen and hot. I know she hasn't been feeling well lately but I think I am in shock right now. I can't believe that two more joints are involved. She also tells me everyday that her fingers hurt. It makes me sick to my stomach.
As far as the x-rays go, Ayla was not having any part of it. She screamed and cried the whole time and they only got one x-ray. John told them that he was not going to force her and that was that. I don't know that x-rays are of the utmost importance right now anyway.
I called the Dr. yesterday and told her about Ayla's swollen knee and toe. I was wondering if we should increase the Naproxen dose since these two joints popped up after we decreased the naproxen dose. She assured me that decreasing the naproxen dose had nothing to do with it. She said that it was just the progression of the disease. She did not want to increase the dose, because Ayla has been getting the maxium dose for almost 8 months now. She is worried about the possibility of bleeding and the fact that her hemoglobin is so low. She wants to start Ayla on a low dose of steroid until the methotrexate starts working, and hopefully it does! Ayla will also have to take zantac with this because of the possibility of it upsetting her stomach. So we are up to five medicines now. I am beginning to wonder if this will ever stop. John and I are both really stressed out about this. We just want our daughter to feel good. She has not felt well for so long. We both cried yesterday because it just hurts so much seeing your child in pain and complaining everyday. I am sure that it affects us way more than it does her. I mean she will never remember this right? I have to get Ayla's blood work done again next week and we will go to Cincinnati in another three weeks. Please keep Ayla in your thoughts and prayers.
Ayla's current meds
Naproxen 125 mg/5ml 1 tsp 2 x day
Methotrexate .3ml 1x weekley
Folic Acid 1mg tablet 1x day
Prednisolone 15mg/5 ml 2ml 1x day
Ranitidine 15mg/ml 1.6ml 1x day
Multivitamin 1x day

Nov 4, 2008

Ayla Update


Unfortunately, this is not a good update. Since we decreased Ayla's naproxen dosage a couple of weeks ago, she has been complaining almost every day of her foot and fingers hurting. On Sunday we discovered that her third toe on her left foot is swollen. Now the top of her foot is swollen, John said that her metatarsal joint is inflammed. We are both sick to think about it. If you remember, all of her other affected joints have been on the right side, this is the first joint on the left side that has been affected. I remember the other day when we were putting her left shoe on, she kept saying it hurt, I couldn't figure out why because only her right foot had been hurting up until now. I have a call in to the Dr. to see if we can increase her Naproxen dose again until the Methotrexate has a chance to work. Ayla just received her second dose on Saturday evening. Today I am taking her in for her x-rays. This is very upsetting for John and I . I just can't hardly think about it without crying. I just want her to be a healthy two year old like she is supposed to be!

Oct 31, 2008

Trick or Treat

Brennan enjoying one of his "treats" and making his rounds.............

Add Video

Ayla collecting all of her candy





and stopping to smile for the camera!!!



Isn't she the cutest bunny you have ever seen?




Here is a little video!!


video
It was a successful Halloween night. I was not sure how Ayla would do but once again to my surprise, she had a great time. She even said "trick or treat to everyone" followed by a polite thank you! Once she learned that she would get candy from everyone, she was on board!! Of course she always got a little extra just because she is so darn cute!! We only took her down one street in our neighborhood and she did great except for when she saw someone dressed up a little scary. I then picked her up until the scary person passed. Every time she saw a duck, puppy, etc.. she would tell me "mommy duck quack quack"..or mommy there's a doggy...it was so cute! Brennan just tagged along watching everybody. He had on his little mechanic looking coveralls. I have had them for a while so I thought they would be cute for Halloween. My mom kept saying he was the UPS man..hehe. It was a good time but very cold so we didn't get to stay out too long!! I just hope that Ayla doesn't think that trick or treat is EVERY night!!
Ayla is still doing good. Brennan and I are fighting a cold and of course it couldn't come at a worse time. I am praying that Ayla does not get sick...enjoy the Halloween pics, oh and I posted a little video at the end of Ayla. I have a neat video feature on my camera(the only thing I like about it), and I was just seeing if I could post it and it worked!!

Oct 28, 2008

New medicine

Finally, after putting it off as long as we could, we started Ayla on her medicine (methotrexate) Saturday night. It was the worse day ever because I was just dreading giving it to her. You would think I was giving her poison. I just really never thought that we would have to resort to a second line medicine. Seven months ago when this all started, I thought that we would get this under control and it would be no big deal. Now, I really have no other options and if it will help her and make her feel better then I know it is the right thing to do. It still upsets me and that vial of medicine is just a reminder that I do have a child with a chronic illness. It is just so frustrating.
Saturday evening before we gave her the medicine we took her out for a little bit. John had to end up carrying her all evening because she was complaining about her ankle hurting her and she would not walk on it. Since we have decreased her naproxen dose one week ago, she has complained every day about her ankle hurting. The methotrexate usually takes about three to four weeks before any results are seen, so hopefully this will help her ankle . If not, she will probably have to have another joint injection to her ankle. Anyway....

We gave her the medicine on Saturday night around 9:15 pm.. we mixed it with a little bit of juice and she drank it with a straw out of a little medicine cup.. everything went great, we kept her up for another hour to make sure she had no reactions and then she went to bed. I was a nervous wreck all night and did not sleep at all. I was sick to my stomach because I was so stressed out about everything. Ayla started crying in her sleep around 1am, I looked in at her but she was still sleeping so I did not get her up. I am guessing that her stomach was upset from the medicine as this is the most frequent side effect and that is why they tell you to give it before they go to bed. She eventually stopped crying and slept the rest of the night without a problem. She woke up Sunday morning crying around like usual and was not interested in eating. As the day went on, she eventually became more active and by evening she was running around playing.

Today is Tuesday and as far the medicine goes, she is doing great. She is still complaining about her ankle but I have confidence that it will get better as the medicine starts to work. I know that she is in God's hands and that he will take care of her. I pray every night that he wrap his arms around her while she sleeps. It is so nice to know that she is surrounded by prayer from everyone. I have been reading a children's bible to her every night before she goes to bed and I always tell her how much Jesus loves her. Even though she doesn't understand, out of all her books, she loves this one and she sits so contently listening to every word. We always say a prayer and then end the night singing Jesus loves me, Oh how I love Jesus and My God is so Big....

My God is so big, so strong and so mighty there is nothing my God can not do for you~!

I know there is nothing that our God can not do and I know that he is watching over Ayla and like Mammaw said to me today, He will work this out for her in his due time. Thank you Mammaw for all of your prayers!

Oct 23, 2008

Eye appointment

Yesterday we had an eye appointment to make sure that Ayla's eyes are still not affected by the arthritis. I may have mentioned this before, but with the type of arthritis that she has (extended pauci-articular) she is susceptible to developing inflammation in the eye as well as the joints. If eye involvement is going to occur, most children will develop eye disease within 7 years of the onset of arthritis. The term for the eye inflammation is called uveitis. The inflammation rarely causes any symptoms such as blurry vision, pink eye, squinting , or pain. Since few or no symptoms are recognized, her eyes must be checked on a regular basis (every 6 months) before the eye is damaged and causes changes in vision. The damage has potential to cause cataracts, increased pressure in the eye, or serious damage to the iris. To check for this, a slit -lamp exam has to be done. This consists of putting your chin and forehead onto the back of a microscope, while the Dr. looks in your eyes through the other side. Of course Ayla did not go for this so we had three people holding her down . One person was holding her head, one was holding her eyes open and I was holding her arms and legs still. Thank goodness it did not take long and everything checked out okay. I am hoping that as time passes, this will get a little bit easier. At least we have another 6 months before we have to do this again.







Since Ayla had a bad afternoon, I decided to take her to Target so she could get out for a little bit. Of course we went to the toy section and of course she went straight to the baby dolls. She was so funny, there was this wooden baby center there that she absolutely loved. It was like a changing table, a bathtub, highchair and bed all in one.... she kept saying she had to put her baby to bed and I could not get her to leave. The other funny thing was that she picked out this little tiny baby no bigger than 5 inches I would say and she was just holding it and patting it and putting it in the bed, I could not get her attention away from this baby care center








UNTIL........








she saw THE CHAIR. Okay there was this chair beside the baby center that caught her eye. It was a saloon chair for baby dolls. It was little, and it came with a hair dryer and curlers. For some reason she was fascinated with this chair. She started carrying this chair everywhere, she would sit in it and then she would put her baby in it. Well this went on for probably around 30 minutes because we were waiting for Daddy to meet us. When John got there I told him about the chair and the baby etc.....I told him I had never seen her play with a toy like this before. So....... we tried and tried to get her to leave the chair behind because after all we had spent most of our time at target in the toy section. So after a brief discussion, I decided that she did not need this chair and we would just distract her and leave the chair behind. Okay this did not work, she started sobbing and she would absolutely not leave her chair. So of course daddy said oh just get it for her. There was not a price on it so we thought it could not be that much and besides Ayla hardly ever asks or cries for anything when we go shopping. So just picture us walking through target, Ayla with her chair in one hand and her little tiny 5 inch baby in the other. She would not let me hold the chair or put the chair in the buggy. She lugged that thing through target and everyone was laughing at her. Of course I happened to have my camera in my purse and I had to take a picture. It was so funny. So needless to say Ayla got her $23.00 plastic baby doll hair styling, saloon type chair . Enjoy the pictures!!




Oct 21, 2008

It's Official, Brennan is ONE!



Well, now I can say I have a two year old and a one year old. Brennan's first birthday was on October 18th. I can't believe it has been a year already. We had a small celebration on Sunday with family and friends. It was nice to share his first birthday with the people who mean the most to us. Our friends from Indiana came in and surprised us by showing up at the party. It was awesome to see them and spend some time with them. Brennan had a good time, of course he had no idea what all of the fuss was about. He liked his cake but unfortunately he did not like the very cute birthday hat that I thought he must have. Oh well, I did get one picture with it half way on..hehe...
This first year with Brennan has been a joy. He is a wonderful baby. He is so loving and the only one out of three who loves to cuddle. I just love it when he sucks his thumb and lays his little head on my shoulder. He loves to be loved on. I will just sit and rock him and whisper in his ear how much I love him. He takes it all in and enjoys it as much as I do. It is sad now just thinking about it because I know these days will not last forever as I wish they would. He is growing so much everyday and so that is why I cherish every moment that I have with him. I don't ever want to forget that big, huge smile he has when I get him out of bed in the morning, or how those beautiful blue eyes light up when I smother him with kisses.
This past year has been rough on all of us with Ayla's diagnosis of JRA. She has needed my full attention most of the time, and Brennan has been my little angel letting me take care of her even though it has taken me away from him at times. He has been very patient and is such a sweet, calm, loving baby. I don't know how many times (when I am taking care of Ala) I have said I am so thankful that he is such a good baby. God definitely sent me an angel when he gave me Brennan one year ago.

HAPPY FIRST BIRTHDAY MY SWEET BABY BOY. I LOVE YOU SO MUCH!!

Oct 16, 2008

Cars and Skating....











Well first of all I just have to tell you about Brennan and his new found love for cars. Hmmm.. I wonder where he gets that!! For those of you who do not know, John, my hubby loves cars. He has owned A LOT, restored a couple and can tell you just about anything you want to know about one. His passion or should I say illness is for FAST ones though I must say... And for those of you who do know John and his love for cars, you will find this very funny. Today John and I decided to go grab a bite to eat with Brennan because Ayla was taking a nap. When I got into the car I looked back and saw that Brennan had a little hot wheels car in his hand. He has been playing with them recently, rolling them on the floor and making the vrrrmmm car sound. Which brings up a question. How in the world does a child not yet a year old know what kind of sound a car makes? It amazes me, he is just so darn smart..heheh... Anyway, I asked John where he got the car and he said that he had it in his hand when he picked him up . Well, I will have to post pictures later because they are on my phone, but Brennan held on to that car throughout THE WHOLE ENTIRE dinner. He had the car in one hand while he was stuffing his face with the other hand. It was so funny. I am not kidding you, he did not put that car down one time. I must say that his dad was extremely happy. It is safe to say that he will probably be walking in his fathers foot steps when it comes to cars. Oh boy I guess I am in trouble!!!




Okay so you are probably wondering what the skating is about in the post title. Well this evening we took the kids to a Halloween party at the ice skating rink. I wasn't sure how Ayla would like it, if at all, but it was for the employees children at the hospital where my husband works and it was free, so I thought I would give it a try. Well I have to say that I may have a future Olympic figure skater on my hands. Ayla absolutely loved it! I love it when she actually enjoys herself and has a good time. There are so many times that she does not feel well, and It makes me so happy to see her so happy . Of course she did not put skates on, they had a little section of ice for the little kids and they could go out on the ice and wear their shoes. John held her under her arms and scooted her around on the ice(like she was skating) the entire time. Well until his back could not take it anymore. It was so cute, and she was so cute. She was dressed like a little bunny, in honor of her bunny that is never far from her sight. Of course she cried when we left but we had a great time and I am glad that we went.
I took Ayla to get her blood work drawn a couple of days ago. I was not looking forward to it, but I knew that we needed to get a baseline before we started her new medicine. She was fine until we actually stepped through the doors of the lab. She instantly started crying, I guess she remembers what happens when she goes there. This was not good considering we have to have her blood drawn every month now to monitor her liver. Even though I use a topical numbing cream, it is still traumatic for her at this point. She cried the whole time and then when it was "all done" as she says, with huge tears streaming down her face she said "thank you Ita"(Rita) to the lady who drew her blood. She is so sweet. Of course this scored her big points with the employees in the lab and she got apple juice, Gram crackers, stickers and two stuffed animals. She tells everyone thank you, even when we are checking out at the grocery store or at target she says thank you to the people at the cash register. It is so funny. She says thank you when you change her diaper or when you put a bow in her her. What a sweet spirit she is. I just wish that she felt better. She has been holding her right arm/wrist for the past few days and has told us that it hurts so I am not sure if this is the arthritis or not. I do not see any swelling, so I guess we will just have to watch it for now. I have already got the results of her blood work, everything is about the same. Sed rate is still high, hemoglobin still low.
While I was writing this, her Doctor from Cincinnati called to tell me that she had just got her lab results. She of course told me everything that I had already knew. She said she wanted to reduce Ayla's Naproxen dose from 1 tsp 2x a day to 3/4 tsp 2 x a day. She said Ayla is on the max dosage and has been for a long time and she is worried about GI problems. She also wants us to start her on a multi-vitamin with iron for her low hemoglobin. She said in the future we may have to do some iron studies, but for right now, we will try the vitamins. So for now all we have to do is get x-rays done and that will be all for a few weeks. Please continue to keep her in your prayers. Here are Ayla's most recent lab work results.
hemoglobin 10.6 normal (11.2-16.0)
platelet count 624 normal is (120-450)
sed rate is 61 normal is (0-20) this is used as inflammation marker

Oct 11, 2008

Brennan, Caught in the act!











This morning as I was attempting to get ready, I gave Ayla a banana to eat. Usually I just give her half and she eats it. Well today she wanted to eat it with a fork for some reason so I cut it up and put it in a bowl for her. I sat her on the floor with her banana as she watched Sesame Street. Brennan was in his bed playing after taking his morning nap. I was still running around getting sippy cups and the diaper bag ready to go . We were going to go to the farmers market, they were having a Halloween day for the kids. Well, Brennan started crying so I got him out of bed and let him run around while I was finishing up. I forgot about the banana in the floor but it took Brennan no time to find it. When I realized that it was too quiet and I hadn't heard Brennan in a while, I knew something was wrong. I walked into the room and there was my sweet, precious Brennan squeezing the banana all in his fingers. It was all over him. His face and legs were covered with bananas. Oh yeah, and he decided to smear it all over the couch as well. Trust me he was having a GREAT time. I guess it is safe to assume that he likes bananas. This was his first REAL banana. So again, I grabbed my camera and took his picture. Make sure you click on the picture so you can see his face up close. TOO CUTE! The other pictures of Brennan was taken later in the day. His favorite thing to do is throw Ayla's plastic dishes on the floor. He does this over and over. It is so funny. I guess he likes the sound it makes on the floor. Who knew dishes would be his favorite toy?

Oct 10, 2008

Ayla's encounter with " ipstick"


This evening I had the brilliant idea that I wanted to go to Toys R Us and get Ayla some new crayons and markers, washable of course. I can't remember what I did with her old ones so I had a revelation that she needed to get in touch with her artistic side and she had to do it tonight. My friend had told me about some new markers that have just a little tip on the end, which wouldn't be as messy. So off to Toys R Us we went to get the markers. Just imagine a two year old and an almost one year old running around in Toys R Us . Yeah, not a pretty picture. Ayla had to pick up every toy and Brennan was running everywhere. Eventually Ayla found a huge battery operated car and she had to get in it. After that, we were done. John had to pry her out and of course she threw a fit. Brennan in the mean time leaked out of his diaper (putting it nicely ) all over me. So our trip to Toys R Us was unfortunately cut short. When we got home and after I put Brennan to bed, I got Ayla's new markers out. We sat in the floor and she attempted to color with her markers. I looked away only for a few seconds and when I looked back, she was pretending to be putting on lipstick. Of course I freaked out because it was all over her mouth but a little water took it right off. I knew I was getting the washable ones for some reason!! Ayla just looked at me like what is the big deal and said "ipstick". After I realized that she was not going to die, I grabbed my camera and took a picture. It looks like we will be playing with the markers another time!

Oct 9, 2008

Pediatrician Visit

Today was Ayla's appointment to get all of her vaccines up to date. Thankfully she only needed her hepatitis A shot and the flu shot. We normally do not give our kids the flu shot, but because Ayla will be on Methotrexate which will lower her immune system the doctor said that is was very important for her and for Brennan to get the flu shot. She said if Ayla were to get the flu, it could easily turn into pneumonia and she would probably end up in the hospital. Again, I feel that I have no other choice, I want to keep my children healthy and limit the possibility of them getting sick so what are you going to do? I hate feeling like I have no other choices than giving my children medicine and vaccines all of the time. Since I am on the topic of vaccines, I have been doing some research on them lately and I am just not sure I agree with all of them. Some mothers have swore that vaccines have caused their children with JRA to have flare -ups AFTER they were in remission. It just makes you think, if they ALL are necessary. I don't know, it is something that I am definitely going to think about more and research more. I think more and more parents are choosing to NOT to have their children vaccinated. At least not all of them anyway. Of course the doctors make you feel really dumb when you ask questions about this and whether it is TOTALLY necessary. Okay, well after I do more research, I will keep everyone posted. Brennan's 1 year old appointment is coming up in November so I am sure he will be due some of the vaccines.

Ayla's appointment went okay. She cried of course, sometimes I wonder if this will ever change. The nurse however gave her some smarties (the candy) because she was crying and that helped tremendously. This was the first time she has ever had candy besides a sucker, and she LOVED them. It was so funny, after she ate the first roll, she kept doing the sign language sign for more and kept saying "more candy" the whole entire time the Dr. was in the room. Anyway, I let her have more candy because she did get two shots and I felt bad. Oh, well, it was for a good reason!!! Now that this is out of the way, we will get lab work and x-rays next week. Ayla will start on her medicine two weeks from today.

Oct 6, 2008

Our first trip to the Pumpkin Patch





Today we took the kids to the pumpkin patch. I thought it would be nice for the kids to pick out a couple of pumpkins and to get into the fall spirit. I love fall and the beautiful colors that come along with it, especially here in West Virginia. The trees are so beautiful this time of the year and the weather is perfect. Maybe this will be our new family fall tradition. I thought it would be cool in the evening when we went, so I had long sleeve shirts on the kids, it turned out being extremely hot and they both I think were pretty miserable. Ayla was happy at first but that was short lived. The pumpkins were in a field that was very uneven and bumpy not to mention dusty, and she could not get around to well without falling. She is still somewhat unstable when it comes to uneven surfaces. She decided very quickly that she did not like it and trust me she let us know about it. Brennan on the other hand had a great time, he was sitting in the dirt playing with the pumpkins, having a good time. There is not a lot that bothers him or gets him upset. He is so laid back and happy all of the time, a total opposite of his sister. Our friends, Adam, Kristi and their son Ben went with us as well. Adam took some great pictures of the kids , in which I am very grateful for. Thank you Adam! On the way home we stopped at a park and let the kids play. Well Ayla play. Brennan just walked around in circles like most 11 month old babies do!! Ayla loved the swings and slide. She kept her daddy busy. She kept saying "watch mommy", she was so proud of swinging by herself! I love seeing her so happy. We knew when we left that she was going to throw a fit because she was having such a good time and she did exactly that. We are really going to have to invest in a swing set for next summer. Anyway, here are the pictures from our first annual pumpkin patch visit!